The Redefinition of ASD – a Collective Outlook

International Journal of Technology and Inclusive Education (IJTIE), Volume 7, Issue 2, December 2018

The Redefinition of ASD – A Collective Outlook

Sandra Patrícia Pereira, Tereza Ventura KIE: Knowledge, Innovation and Education, Portugal

Abstract

This article is the second of a series of reflective facing unpredictability and excessive sensory stimuli. reports on a work in progress that aims to measure the After the diagnosis, the family worked out their beliefs, transformative impact of a child with Autism Spectrum developed their resilience and took on the responsibility Disorder within his/her intervention nucleus in a of defining an intervention program that would allow bidirectional logic of personal and social learning and only their child to be the only one to set the limit of his development. The family is studied as a mobilizing agent development [1]. of the community for the definition of a common project They adopted the Son-Rise Program (SRP) as their in which everyone will be subject and object of method of intervention, having as a structural pillar the transformation and learning. The problem is deepened, resorting to elements of the community, in a volunteer moving from the family domain to the volunteer’s social way, as mediators and promoters of learning and context. The program is described and how it prepares development. They selected, recruited and taught and monitors learning and practices. A qualitative volunteered to give life to a community governed by the methodology was adopted, using semi-structured common goal of optimizing the child's zone of proximal interviews and focus groups, trying to understand how development. They nurtured the team spirit and used their the love for a different child allowed preparing an action skills and tools to work the group's cultural, emotional plan in which shared responsibility, belonging and unity and social intelligence, contributing to the dual purpose gave birth to a new idea of a learning community - the of teaching and learning. Son-Rise family. Collectively, they affirmed themselves as a space of exchanges and social interactions that can awake the 1. Introduction potential development of all the participants. They believed in the power of sharing and cooperation, valuing This communication follows a preliminary article democratic dialogue and inclusion, promoting feelings of attempting to verify the transformative impact of a child shared responsibility, belonging and unity that gave birth with Autism Spectrum Disorder within his/her to a new idea of learning community - the Son-Rise intervention nucleus (18 members, between 37 months family. and 42 years old), thinking about education as a They inspired other families who showed interest in the multilateral process in a learning community. It aims to method and curiosity for the complicity and synergy understand this nucleus (parents, child, fourteen created around that team. Several parents of children with volunteers) as an ecosystem based on the egalitarian ASD sought help in this learning community and the dialogue concept, studying interactionist practices, based information and knowledge were widely shared. This on the collective belief that a systemic evolution contagion has been rampant and other Son-Rise Families necessarily results from the capacity for individual have emerged, creating an informal alliance in which transformation, in a dynamic of mutual influence. together they promote and motivate themselves. The child in question will be named G, 34 months old, It is important to point out that this development of male and diagnosed with an autism spectrum disorder. In collective potential has occurred without planning and in the initial diagnosis, he presented a great impairment in an unpretentious way, as a natural result of the socio- all areas evaluated, denoting a lack of consistency in interactional exchanges promoted by the method itself, by visual contact, inexistence of verbal and non-verbal the learning derived from reflection and by the respect communication, and a null period of interactive attention. and profound gratitude of this family towards those who, He showed lack of facial expression, as well as restrictive in an altruistic manner, still unaware of the transforming interests and exclusive and repetitive movements. His power of a different child, accepted to participate and condition seemed aggravated by widespread hypotonia, change for the sake of love. which inhibited motor development; by an avoidant Reflecting on the power of resilience and the role of eating disorder, associated with the oral hypersensitivity these new learning communities in society, promoting the that he manifested and the irritable bowel syndrome he democratization of lifelong learning and development are suffered from. He is methodical and reveals discomfort aspects to consider in the context of an inclusive,

cooperative, shared and participated citizenship that relationships, integrated in other subsystems, with which longs for a society of everyone and for everyone. it develops, influencing and being influenced internally and externally in an ongoing process of development. 2. Autism Spectrum Disorder Thus, and after reviewing the reference literature, the diagnosis of ASD seems to present distinct, yet The American Psychiatric Association [2] presents penetrating and bidirectional, influences throughout the autism as a complex neurodevelopment disorder that family, being necessary adjustments in the economic, manifests itself with great variability in the intensity and social, recreational, domestic, affective, educational in the form of symptomatology. Taking into account this aspects, as well as in the family identity. An effective and variability, the denomination Autism Spectrum Disorders immediate multidisciplinary follow-up of the family is (ASD) was adopted, allowing a single categorization of fundamental, capable of welcoming the diagnosis and a the continuous diagnosis, adapted to each individual faster passage through the various phases of mourning, through the associated specifiers and deficits that best promoting reorganization, emotional adjustment and represent the heterogeneity of the behavioral phenotype family health. Despite the quality of the follow-up, the of that individual. process of acceptance is time-consuming since there is a This spectrum is portrayed as a behavioral and need to mourn the idealized baby. The family needs to relational dysfunction that concomitantly presents appeal to their emotional fertility, letting the real child be persistent impairment in social communication and reborn in their imaginary, idealizing him and accepting restricted, repetitive and stereotyped patterns of behavior, him no matter the limitation or difference. interests or activities [2, 3]. Based on the perceptions of This capacity for reorganization and acceptance is the studied family in this article and the method of significantly correlated with the resilience of each family, intervention adopted by them, it is assumed, however, that is, with the capacity of self-regeneration, not that autism, although having behavioral manifestations, allowing them to be destroyed by adversity, trying out is, in fact, a socio-relational disorder [4]. strategies capable of overcoming challenges and Etiology is assumed to be multifactorial, involving promoting growth in critical moments. The literature genetic, neurological and environmental causes. points out that factors such as knowledge about the child's The first clinical manifestations usually occur before problem and the most effective strategies of action; a 36 months of age, completing the diagnosis between the stable socio-economic level; the social support; a ages of 3 and 4 years, when the child is perfectly inserted structured and supportive family environment, permeated in a social context where the expression of the by commitment and flexibility; high levels of symptomatology is more evident. communication and interaction; internal and external According to the data from the Center for Disease coping strategies; a positive outlook on life; and a family Control [5], the prevalence of the disease is 1/68, reaching belief system are agents that promote the resilience of 1.47% of the world’s population, being four times more families of children with ASD. frequent in males. A positive adaptation, permeated by optimism and Given the aforementioned difficulty in defining acceptance, seems, as described in the literature, capable etiology, several intervention models/programs are used. of promoting feelings of hope and control, fundamental In this article, the SRP method is essentially approached, to determine the quality of the parental relationship, the since it was the one that was chosen by the studied family, precocity of the intervention, as well as the family which best corresponded to their beliefs and expectations involvement in this process. of the intervention. Currently, a paradigm change regarding the role of the family in children with ASD has been evidenced, starting 3. Family to occupy a prominent place in the most varied models of intervention, particularly in the parents. It seems to be understood that parents are one of the best resources of Assuming ASD as a socio-relational dysfunction, the the children, both for their knowledge and for the family takes on a particular role since it represents one of relationship with them. The training of the parents the main socialization contexts, being the first mediator presents itself as one of the most efficient answers to a between the child, the surrounding environment and dysfunction that, due to its prevalence, begins to be culture. Thus, it becomes fundamental to clarify the assumed as a public health problem that requires not only concept of family, the factors of imbalance and stress that an early diagnosis, but also a concerted strategy that interfere with him (the protective aspects), as well as the breaks with the exclusivity of the medical model to needs in his development. establish the focus on a social model oriented towards the As a result, the family, in the systemic and ecological family and the environment. The empowerment of adopted perspective, is presented as an open interactional parents/caregivers and the use of natural contexts as system, constituted by elements linked by a set of intervention scenarios begin to be the basic features of

this new paradigmatic model. With training and skills, accelerated and there is a greater vulnerability and parents can become multipliers of knowledge and carry susceptibility to external stimuli, favoring the mitigation out therapeutic processes with their children, being able of the original functional limitations, training new skills to create a network of sharing capable of reaching a larger and promoting new connections capable of enhancing the number of families in the community. functional rigor of neural circuits. The literature positively and significantly correlates the Neuroplasticity is thus the ability of the brain to remap intensive nature of the intervention with its success, the connections of nerve cells resulting from mental pointing to an ideal weekly duration of forty hours, only stimuli that can be activated according to the achievable with the inclusion of the parents as therapeutic sociocultural experience of the individual and that allow agents. These parental preparation and training have, as it the creation of new ways for neural communication. is evidenced in the literature read, a direct and significant Brain plasticity may occur by eliminating neurons that are repercussion on the child, but also a renewing impact on not adequately stimulated (apoptosis), modifying the the parents. They abandon the feeling of powerlessness to morphological and functional dynamism of the neurons consider themselves as active and preponderant elements through the strengthening of their neurotransmitters and in the definition of a strategy of action for their children, modifying the structures involved in synapses and perceiving themselves as agents of change that unblock neurochemical changes. opportunities and promote the potential of that child. As the benefits of early intervention and neuroplasticity are well described, reaffirmed and 4. Early Intervention and Neuroplasticity consensual in the literature, the same does not occur with the analysis of the cerebral connections observed in Given the specificity of the challenges presented in children with ASD. If some studies point out poor ASD, an early, immediate and intensive intervention is connectivity between neurons, translating into less essential since, no matter the scientific perspective and/or efficient long-distance connections, others converge to intervention program or adopted method, it is understood neural hyperstimulation in specific brain areas associated as one of the predictive success factors, being with excess synapses. This fact seems to be justified by a determinant to stimulate the children's developmental slower process of apoptosis or neural pruning, levels, enhancing their abilities and stimulating the culminating in an overloaded brain of unspecified and neuroplasticity necessary to minimize the symptoms and super-reinforced connections that harm its typical acquire the skills. development, hampering learning, acquisition and This consensus regarding the importance of early refinement of new skills and competences. intervention in ASD is universal since science considers The bet on the study of brain connections and the possible that intervening in early childhood, at a stage reaffirmation of brain plasticity are affirmed as sources of where the central nervous system is more plastic and hope capable of operating profound changes in the permeable, attenuates symptoms as well as stimulate and definition of intervention plans focused on the develop new synaptic connections. adaptability of the brain influenced by the environmental It is known that autism starts when the neurons that stimulation. By thinking of our capabilities and abilities coordinate the socialization and communication skills as competences, mostly shaped by the environment, the present themselves at their best moment of development brain can be appropriated to the desired development, and permeability. As such, in observance of some risk giving the right stimuli and experiences, operating a factor, an intervention plan should be initiated significant change in the life trajectory of the child and immediately to optimize the greater cortical plasticity his family. associated with this development phase, instead of In short, modifications occur throughout life, through directing it to the moment of a definitive diagnosis. the development of learning ability and the refinement of Several studies prove an unparalleled rate of development acquired skills; however, the moment of greater plasticity in children under five compared to the rest [26]. Research coincides with early childhood, a critical period of brain legitimizes this finding by stating that although neuronal development, in which flexibility and neural permeability plasticity is a reality at any point in the individual's life, it are more expressive, being predictive of greater and faster will be easier to train a new competence than to annul or success. extinguish an already crystallized symptom and then to The intervention programs should therefore bet on the train the competence that will replace it. unlimited potential of each child, working the By analyzing the literature, it is verified that the more adaptability and plasticity of the brain; the precocity and recent it is, the more it is certified the possibility of early frequency / daily intensity of training and the family as an detection of risk factors and immediate response, optimal element of transformation. allowing to increase the success rates of the intervention. After several years of research, it has been shown that Research suggests that the first four years of life is a early intervention accelerates the child’s development; critical period because the pace of development is most

improves family functioning and reduces future costs process, like the rest, provided that they are properly with special education and rehabilitation services. stimulated in a receptive educational environment and conducive to interactive exchanges [8]. 5. The Son-Rise Program (SRP) The Son-Rise Program offers several treatment options, where the intensive home programs (40 to 56 The SRP is an intervention model that aggregates the hours per week) seem to present more expressive success biomedical and educational approaches in a symbiosis rates [9]. that is completed with the intervention of the families [7]. Since this is a 1:1 intervention, in sessions lasting no It understands autism as a difficulty in connection and more than two hours, there is a need to co-opt a large social interaction, in which the behavioral impairments number of volunteers who are guided by the same are perceived as attempts by the child to preserve his principles and work for clear and common goals. These sensory, motor and cognitive balance in a world that he volunteers will be the child's eyes to the world, trying to does not yet understand. It began in the 1970’s when rescue him from a state of inertia unable to leverage Barry and Samahria Kaufman did not resign themselves learning and promote development. to the prognosis associated with their child's severe The empowerment of parents, the belief that it is in autism diagnosis and developed their own home-based social exchanges that learning resides, the use of natural approach to affectivity, acceptance, motivation and belief contexts as intervention scenarios and the need to create in Raun's potential. Through the joining technique, they a cohesive work team have encouraged the creation of attempted to create a connection that would allow them learning communities where all the intervenients can be to rescue Raun from his solitary world, giving him control simultaneously learners and multipliers of knowledge, and the possibility to manage his timings in a sensory creating a network of sharing in which the whole overlaps controlled and predictable space. Assuming a socio- the part in the pursuit of a common goal. interactionist perspective, where some saw defects, these parents found opportunities. They believed in the 6. Learning Communities (LC) precedence of learning about the development and in the interaction as an enabler of acquisitions [8]. The concept of Learning Community, not being a After three and a half years of intensive work, Raun, recent concept, since it is based on theoretical who had been assessed as having an IQ < 30, recovered assumptions related to Vygotsky's socio-interactionist completely from autism, developing a neurotypical and Brufenbrenner’s ecological views, seems to gain development. He completed the Biomedical Ethics importance at a time when it is assumed that the course and is currently the CEO of the Autism Treatment significance and effectiveness of learning are supported Center of America, founded in 1983 by his parents [4]. by the interaction and co-construction of knowledge [10]. The success of this intervention seems to confirm the Vygotsky, by introducing the concept of Zone of importance of the quality of social interactions and the Proximal Development (ZPD) as a mediator between real collaborative dynamics to strengthen the Zone of development and potential development, where learning Proximal Development, as Vygotsky affirmed, is leveraged through the sharing and the quality of contributing to understand that the individual's learning collaboration with more experienced individuals, capacity is determined not only by biological factors, but cements the focus on mediation and the humanization of also, essentially, by the ability of the support system to learning. Thus, understanding the ZPD, as a constantly relate itself with the individual's cognitive structures. changing psychological domain in which, through The SRP is intended to enable parents to take charge of support techniques (scaffolding), one consolidates the intervention, transmitting them the confidence they emerging functions and promotes human development, place in the development of children and showing them allows a dynamic conception of intelligence as a that autism does not have to be a life sentence. construct of the individual's sociocultural interactions The first step is to train the parents, welcoming them, [11]. encouraging them to appreciate the difference of their The idea of democratization of learning emerges, child and to believe in their abilities. At the same time, assuming that all are capable of learning and evolving in parents are taught to use the educational, attitudinal society, regardless of their current condition, since only a principles, techniques, and tools that make them the most tiny part of human potentialities are optimized, while the effective educators of their children. They are also rest is waiting for an adequate profitability of the ZPD. confronted with the need to create a playroom that Thus, it is believed that, using appropriate support promotes a great learning environment, great for the techniques and permeated by the quality of mediation and sensory processing and where inputs are controlled and socio-cultural interaction, it will be possible to intervene diminished. The concern with the physical space of the in the developmental path of a society and, consequently, intervention meets Vygotsky who defended that people of the individuals that integrate it. with disorders are capable of benefiting from the learning

Learning is thus assumed as the result of a process of logic of transient support and progressive autonomy. exchange, in which individual and environment mutually Given the scientific evidences that show a positive and influence each other, being in constant movement and significant correlation between the weekly duration of the transformation. intervention and its success [7, 13, 15], the studied family In sum, Vygotsky's perspective is based on the belief decided to implement the Full Time - Level II Program, that the highest mental functions emerge from social with a weekly duration of 40 to 56 hours. In order to processes and that these processes are formed through enable this intensive implementation of the program, it cultural tools or artifacts that mediate the interaction was necessary to select, co-opt and train fourteen between individuals and among them and their physical volunteers who, at the end, are part of a new learning involvements, echoing effects both in the user and in the community with the common goal of mediating G’s surrounding context [11]. learning and development and, simultaneously, Accepting this ideology and fortified by a common promoting the enrichment and transformation of all interest, the first learning communities emerge as spaces intervenients. of transformative interaction, based on the defense that The constitution of this team was a very rigorous difference and equality are compatible values, mutually process, where the parents assumed that the assertiveness enriching and able to promote equity and learning for all in the selection of the volunteers would be predictive of intervenients. the quality of the exchanges and social experiences These communities take back the defense that the promoted and of the proficiency in motivating G to human condition is built along a historical-cultural integrate a social and cultural context that promotes process guided by social interactions in which significant and internalizable learning [13]. Thus, they development depends on the learning opportunities and attempted to select individuals from various social sphere interpersonal relationships established, considering that quadrants, with distinct personalities, but who shared all the cognitive functions of the individual begin in an unconditional love for G and the entrenched belief in his interpersonal process that, as a result of a long series of unlimited potential. Commitment, creativity, energy, developmental events, will become an intrapersonal empathy, sensitivity, critical and reflective spirit were process [12]. some of the characteristics that parents sought in With the creation of learning communities, the volunteers. Age, academic qualifications or social and paradigm of education is changed, believing that learning economic status were not considered as selection criteria. must take place in a collaborative, cooperative and The diversity of opinions and experiences was valued, instrumental dynamic of sharing knowledge, skills and believing in the power of egalitarian dialogue and objectives, capable of transforming the course of personal dialogic interactions, highlighting the individual and collective development. A dialogic and reflective contribution to the development of society, as well as the learning performance is experienced in which everyone is role of the collective in the construction of the subject and object of transformation and learning. individuality of each one. Learning communities, therefore, constitute The recruitment and initial training of the volunteers themselves as an intellectual, social and cultural took place in 3 sessions of 120 minutes each. environment that facilitates a bidirectional learning In the first session, G’s narrative of the development promoting interaction, collaboration and collective was made, explaining his problems, his impairments and participation, developing a sense of positive motivations. After, the fundamentals and principles of the interdependence in which everyone, through practice, SRP, as well as its intervention strategy were presented, evaluation and reflection, empowers their capacities and immediately assessing the interest of those present to join blurs their limitations. the team of volunteers. It was observed that all those present immediately identified themselves with the basic philosophy and guidelines of the SRP, feeling privileged 7. The Son-Rise Program and the creation of that they were selected to develop such a dignified a Learning Community project, believing that, more than mediating the development of a child, they would improve their own The SRP shares Vygotsky's theory by defending the development, as a consequence of interactive exchanges learning capacity of all individuals, relegating to society with all of those involved, and also as a result of the self- the duty to find the most fruitful strategies to trigger and reflexive and critical practices imposed both in the mediate this process. In his approach, it is proposed the personal and social dimensions [16]. definition of a family intervention program depending on In the second session, the SRP developmental model the selection, training and monitoring of a team of was presented and the techniques to be used within the volunteers capable of collaboratively using scaffolding playroom analyzed in detail, complementing with videos strategies, capable of promoting learning and as examples. The SRP considers ASD as a social, development [13], encouraging the initiative, within a relational, interpersonal, and interactional disorder, and

as such, its social curriculum is highly focused on four comprehensive, focusing on education, health, critical areas of intervention: eye contact and non-verbal engineering, management and service to the public. communication, verbal communication, period of Ten of the volunteers belong to the extended family, interactive attention and flexibility. These fields of the remaining ones are the child’s former educator, a intervention must be at the heart of the volunteers’ action friend of the couple with training in the area and the as well as the target of all invested tools. mother of a teenager on the autism spectrum. The “joining” technique, being the pillar of the SRP, is With the exception of the children, who have 30- priceless in allowing, through authentic acceptance, to minute playroom sessions, the remaining participants establish, whenever the child is unable to build, have 120-minute sessions, twice a week. This is connections, bonds and relationships that will be the basis considered the minimum amount of time for the child to of all learning. establish a bond with the volunteers, and so being able to In the third session, pair and group work were done to consider them as non-invasive and reliable elements, stimulate creativity, unlock some attitudinal constraints capable of arousing his interest to the world and people. and promote team bonding. The self-efficacy perception, These sessions are observed through a mirror glass, and, described by Bandura, was simultaneously one of the at the end, the feedback of the follow-up is presented, aspects worked, since the parents gave importance to referring to the techniques used, as well as some their strong predictive value in the persistence and pursuit suggestions for acting and overcoming, giving value to of the common objective [17]. the qualities, availability and love evidenced and In this new learning community, there are 14 promoting the feeling of belonging. All team members volunteers (eight females and six males), a consider that this follow-up process is essential for physiotherapist and the nuclear family (mother, father pursuing the ultimate goal since it promotes self- and child with ASD), in a total of 18 members, with the reflection, stimulates creativity, encourages action in the ages between 33 months and 60 years. limit of its potential, challenging the individual and Given the insistence and interest of two children collective ZPD in a dynamic to grow, allowing the growth belonging to the family in their involvement in G’s [13]. problem and their commitment to help him overcome his The continuous assessment is an essential process for difficulties, the group chose to integrate them in the the readjustment of the communitarian journey. volunteer team, because the relationship with these The team meets monthly for monitoring and training, children will be, in their perception, the beginning of the with the purpose of sharing ideas and experiences, child’s familiarization with his peers and an added value analyzing the set objectives and their level of for the development of specific competences of the social development and redefining objectives, strategies and curriculum. Social interaction among peers is also one of activities. It is also the parents’ goal with these meetings Vygotsky and Brunner's constructs, by stating that to inspire the team by promoting sharing and building learning happens through collaborative knowledge- bonds among the members of this new family, guiding building projects in which the roles of all intervenients them in maintaining a powerful focus: the belief in the intertwine and complement each other, being everyone, unlimited potential of their child. regardless of the roles exercised, apprentices in an In the opinion of the team members, this process of interactive and progressive process of knowledge shared and participated monitoring and assessment of the construction [18]. practices proposed and mediated by the SRP is The physiotherapist, not being a volunteer, belongs to unanimously considered as one of the added value of this the team, and she was the one to express, at a later stage, educational space that they integrate. her interest in collaborating in this common project. The results obtained, as well as the precepts inherent in this 8. The SRP – E(A)ffective Educational - and in any learning community were the factors that were Learning Communities the basis of her decision, sharing the capital objectives of this group. The principles and foundations of the SRP are echoed This team includes four couples, two of them with a in the basic philosophy of the learning communities in all minor child, being the remaining members single and of the above mentioned aspects, and particularly in the with no descendants. belief that any meaningful and perennial learning is With the exception of the children, all volunteers effective only when the conative, emotional, and completed the 12th grade, having six members completed affective functions are integrated and synchronize. Thus, a university course. Only one of the elements has training emotional intelligence, motivation and social cognition in the area of autism and special educational needs, and are essential premises in the definition of this learning none of the elements of the team has worked with this community, extolling the priceless value of the problem before. The work areas are distinct and interpersonal dynamics established between the learning

brain and the more experienced brains, in a search for comprehensiveness in the lives of those who experience socially and emotionally competent individuals [19]. and perceive it. It is believed, therefore, that effective learning and Taking into account the proposed objectives, semi- consequent transformation requires a large emotional structured interviews and the focus group technique were investment capable of acting in the brain, which, though defined as instruments of data collection, both of which compartmentalized, operates in an organized, shared and were directed to all the individuals involved in the study, continuous way. This belief in neuroscience is supported except for the child with ASD. by studies that prove that, since the human being needs to It was valued the researcher interaction with the field be taught in order to learn, this path must be structured in and the importance of his/her subjective interpretation as a social and emotional context, in a dimension of sharing an explicit part of the production of knowledge. in which both learn driven by the emotion that presents a formative role in cognitive processes, in an inseparable 10. Discussion of intermediate results neurofunctionally dynamic of evolution. Considering that learning results from social and The present study used, as sources of information, the emotional interaction between an experienced being and minutes and written reports produced in the monitoring an inexperienced being in which the emotions of some process, complemented with a set of interviews to all the merge with the cognitions of others, a family, in their intervenients in this Son-Rise Community. Both sources executive function of managing the home program, provided a collection of information that was the subject explicitly works the attitude of their volunteers, seeking of content analysis. their emotions as vehicles of effective and affective After fifteen months of intervention, it was found that learning, in the belief that the success of the program feelings of inclusion, acceptance, recognition and depends on the emotional competence of each equality in the design of the action strategy promote intervenient [19]. feelings of personal and social fulfillment, capable of Feelings of security, comfort, unity, appreciation, influencing all the quadrants of their lives. They point out belonging, self-concept and self-efficacy are stimulated that, more than a method of intervention, this program in the feedback sessions and biweekly meetings, letting and this way of exchanging learning imposed themselves them act on a cognition, allowing each volunteer to adapt as a new way of being and thinking about life and to the constant inner changes and then learn to learn in a citizenship. It is important to add the generalized belief process in which he also teaches. that everyone benefits by integrating this voluntary From the analysis of the results obtained, it is possible scheme. They state that, along with all the theoretical and to verify changes that are evident in all the participants. practical knowledge acquired during the training, a new Is this change the meaning of learning? Will the identity accompanied by renewed beliefs and a more intervenients be able to self-analyze and adopt a reflexive empathic and sympathetic inner potential has shown them attitude that allows them to incorporate the changes in the that the impossible is only a little more time consuming, long term, potentiating the transformation? Will all be blossoming a new way of problematizing life. When there transformed or will some be lost in the traces of were asked about the time spent, they were unanimous in transformation? Will triangulation emotions, learning and recognizing it as an investment in their personal, social brain influence this learning and transformation? Will and cultural education, expressing deep gratitude for there be marks in the surrounding society? These are sharing. It should be noted that, at the time of recruitment, some of the questions that are posed in a later phase of the potential volunteers were confronted with the need to the research in which we will try to establish ensure their participation for a minimum period of six convergences between the Sciences of the Education and months in order to promote greater connection with the the Neurosciences, in an effective articulation between child and the rest of the team. They understood the both, aiming at their complementarity. pertinence of this imposition and, at the end of the first year of the intervention, they all expressed the desire to 9. Methodology remain in the team until the final objective was reached. It should be noted that, for health reasons, two members This article integrates a systemic case study with a suspended their participation, but continue to follow the strong descriptive tendency intended to analyze the progress of the intervention in order to remain capable of family system of a child with ASD in its multiple re-integrating the team. Another participant interrupted dimensions, beliefs and perceptions. A qualitative her activity due to maternity/breastfeeding, having methodology was mostly adopted, based on the narrative returned three months later. To fill these absences, even of the facts. With this methodological option, it was if temporary, the parents formed four new volunteers who possible to highlight the importance of the individuals came to reinforce and "empower" this community. involved, as well as their beliefs and perceptions, seeking After interviewing all the participants, it was possible to understand the problem of ASD and its

to verify that acceptance and unconditional love are the reciprocally influenced by the interaction with all the dominant tone of the speech. The common goal is to see intervenients and with the environment. G go as far as he can and to see him independent is the limit. All have revealed that if G’s development does not 11. Conclusion keep up with their high expectations, it will not be understood as a discouraging factor since any gain is a In a globalized and constantly changing society, it is victory and changes are always possible as long as one fundamental to prod the capacity to reflect, to ponder and continues to believe them. All reported that their strength to problematize the future. To see learning as a collective rests on G's small achievements, increased intentional eye process, resulting from meaningful and rewarding socio- contact and interactive attention and deep commitment to interactional experiences, where the plurality of the program. competences is valued and desired and where everyone According to reports, the common motivation in this feels valid and recognized, can contribute to a more project is love, belief in G’s potential, the will to make a inclusive society, being more respectful of the difference difference in the life of this family, as well as the as a factor of enrichment. possibility of being part of a “miracle”. It was also a Taking the limitations as opportunities, working out consensual reference the fact that everyone felt gratified beliefs and shaping attitudes allowed this family to take to be part of a learning community that appreciates the control of the intervention designed for their child, inestimable value of the difference and equity, believing benefiting, together with the whole volunteer team, from in the power of the interaction and cooperation in a a unique learning experience, capable of revealing the project in which the objectives of the participants are potential of all intervenients, in a maxim of which unity closely linked to each other, not being achieved in any is power and that learning is a lifelong process. other way than the collective way. Feelings like the To verify the transformative impact of the intervention perception of self-efficacy, pride and overcoming are also traced to a child at the heart of the community that shared by this educational community. promotes it is one of the great advances of this home- In short, this learning community presents itself as a based program that, along with helping to learn, project of social and cultural transformation that relies on encourages rebirth; therefore, ASD could never be just a the unlimited potential of individuals, preferring to focus struggle of the family but an inevitable community on their potentialities, looking at the limitations as commitment. eventual focuses of opportunity. It also seeks to break with a society that, in Vygotsky's words, has remained a 12. Bibliography development-blocking agent for people with disabilities by infantilizing and underestimating their capabilities [6, [1] Pereira, S. e Ventura, T., ASD – Not a Sentence for life but 8, 10, 11, 13]. a Way of Living, Proceedings of the Canada International Vygotsky, along with the SRP, facilitates the birth of Conference on Education, June 26-29, 2017, Toronto, these communities by advocating the absence of learning Ireland, pp. 297-303. without interaction and mediation, by assuming sharing and collaboration as determinant factors of success. [2] American Psychiatric Association, Diagnostic and Social precedence over the individual is assumed, Statistical Manual of Mental Disorders, 15th ed, Arlington, VA: believing that the efficacy of the learning process is Am Psychiatr Publishing, 2013. intimately dependent on the quality of the interactions with the other and with the environment. His perspective [3] F. Maia, M. Almeida, L. Oliveira, S. Oliveira, V. Saeger; V. Oliveira and M. Silveira “The Importance of Embracing Parents on the capacity of overcoming of the individual, allowing of a Child Diagnosed with Autism Spectrum Disorder”, him/her to act to the limit of his/her potential when using Caderno de Saúde Coletânea, 2016, pp. 228-234. appropriate scaffolding techniques, introduced the concept of neuroplasticity that presents itself as one of the [4] R. Kaufman, Vencer o Autismo com o The Son-Rise basics of the creation of this learning community that Program, PAPA-LETRAS, 2016. believes that intervening conveniently in the area of proximal development of this child may create new [5] Center for Disease Control and Prevention. Prevalence of synapses, unblocking learning and promoting its integral Autism Spectrum Disorder among Children Aged 8 Years: development, reaching, that way the objective that was Autism and Developmental Disabilities Monitoring Network, 2010, 2014, pp.1-21. the basis of its association.

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